What you need to know
- It is important for a child muscular dystrophy to have an opportunity for physical activity to optimize physical and mental health.
- Certain syndromes will have very specific recommendations regarding physical exercise and restrictions.
- Exercise is important and should be encouraged
- Individuals may be able to exercise but not participate in contact sports
- All ambulatory children should participate in gentle exercise to avoid contractures and muscle wasting.
- Activities can include a combination of swimming pool and recreation-based activities.
- Individuals with muscle pain during or after exercise activity should be monitored for myoglobinuria (myoglobin in the urine).
- Muscle pain within 24 hours after exercise indicates overexertion leading to rhabdomyolsis (rapid destruction of skeletal muscle)
- Strengthening exercises may cause damage to fragile muscle cells if done too vigorously.
- Moderate and light exercise or standing exercises, undertaken under the guidance of a physical therapist (PT) or doctor is important.
- This may help maintain muscle tone and flexibility
- This may help combat obesity and bone thinning
- Boys with DMD and BMD should not:
- Lift weights
- Do push ups and/or pull ups
- Abdominal crunches
What you can do
- Encourage academic, social, and artistic activities
- Allow child to help with coaching or team management if there are physical restrictions
- Consider a 504 Plan in school for physical activity modifications if appropriate
- Instruct in self-monitoring techniques so child learns to judge his/her own fatigue level during exercise.
- Provide opportunities for practicing self-monitoring
- Instruct in relaxation techniques, safety, and breathing
- Consider adapting PE program
- Downsize equipment – i.e. smaller bat
- Have a designated runner
- If activity can’t be modified to be safe, have child be a scorekeeper, umpire etc.
- Occupational therapy evaluation may help with accommodations and modifications
- Some individuals may need additional time to get to class
- Limit extra movement between classes
- If there is to be a lot of walking on the field trip it is important to be aware that it may take the child more time and they may be tired
- Consider cutting down on walking when possible
- Use alternative forms of transportation
- Assistive equipment (see Education Supports for examples) is available to improve accessibility and independence in the home, school, automobile and workplace.